Rachel's Fight Against Lyme

Hi all! My name is Rachel and for those of you who don’t know me, I've been diagnosed with Lyme Disease. 

First off, I want to say thank you for taking the time to visit this page. I never thought that I’d be speaking about this publicly, let alone asking for help. 

My Story: 

In November 2015, I started experiencing some very bizarre symptoms— migraines, dizziness, extreme fatigue, joint pain, tingling and numbness in my limbs and a variety of other weird neurological symptoms. After months of trying to keep it together, my body could no longer do what I asked it to do. I became so physically drained that I had to quit my job, move back home and let my family take care of me.

I have been to countless physicians and specialists and all of them missed my illness. They diagnosed me with vestibular migraines, chronic fatigue syndrome, autoimmune disorder and here’s the kicker… mental instability. The infectious disease specialist told me my symptoms were psychosomatic and I was suffering from severe anxiety and panic disorder and creating symptoms in my head. I was shuffled from doctor to doctor for close to a year taking numerous medications that did not work with no explanation as to what was causing my symptoms. When your doctor tells you you’re “crazy” and making everything up in your head you actually begin to believe them. They would say to me, “Your test results are normal. You must have anxiety and depression. You need to see a psychiatrist.” 

Confused, frustrated and angry that the only answer the medical community could give me was that I was “mental” I refused to believe them and I kept searching. After countless, costly and out of pocket lab tests, I was finally given an answer. That answer was chronic late stage nuerological Lyme Disease. Like most people, I didn’t know much about the disease except that it is transmitted by a tick. I had no recollection of being bit by a tick which made diagnosing me that much harder.

Despite the fact I was tested for Lyme back in February 2016, the test results came back negative. The tests used to detect Lyme are 40 year old tests that are outdated and most times inaccurate, yet the medical community chooses to look the other way leaving me and many others misdiagnosed and untreated. If not caught in the early stages the disease travels through the body becoming more difficult to eradicate. The longer the bacteria stays in your system the more widespread it becomes. It burrows into your tissues, cells, organs and attacks every part of the body. The longer Lyme is untreated the more chronic it becomes. My Lyme decided to primarily attack my heart and brain giving me extreme heart palpitations and neurological symptoms causing my central nervous system to go haywire.

300,000 new cases of Lyme are diagnosed every year in the United States alone. Thats more cases than HIV and Breast Cancer combined. However, there have only been 3 NIH funded trials to treat Lyme disease over a period of 16 years. For whatever reason, the medical community has decided to brush this disease under the rug and label it taboo. Since the CDC denies the existence of Chronic Lyme Disease, insurance companies are not required to cover costs related to the disease. Patients spend an average of $53,000 per year out of pocket for tests, doctor visits, pharmaceuticals and supplements.

What most people don’t know is that Lyme does not always travel alone. Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite. Along with Borrelia Burgdorferi, the Lyme bacteria, I have many other co-infections. Blood smears indicate that not only is my body fighting Lyme, but is also riddled with a large amount of Babesiosis (a malaria-like parasitic disease), Rocky Mountain Spotted Fever (RMSF) and Bartonella. People who have simultaneous infections with both diseases usually experience more severe expression of symptoms and a longer duration of those symptoms. I also have many active virus’ such as Epstein-Barr and HHV-6 that have totally depleted my immune system keeping it from being able to fight off these infections on its own. Along with parasites and mold toxicity, my neurological symptoms have become increasingly worse and I’m not able to find the help I need with the options available to me on my healthcare plan. My case was denied by over 10 physicians on my insurance plan leaving me with no options except to go outside my network. My family has already spent well over 100k in the last year for out of pocket treatment and testing and there is still much more that needs to be done. Funding this treatment has wreaked havoc on my family financially (not to mention emotionally). 

This disease has the ability to make me bed ridden for the rest of my life if not treated aggressively. I am seeking your help to raise funds for treatment. Asking for help is a hard thing to do, but I know I'm so close to true recovery. Without raising funds, I will not be able to pursue the treatments I need going forward in order to live a life without pain.

What your donation will contribute to:
- Appointments with my specialists
- Maintenance IV care
- Extensive blood testing to monitor my infection levels
- Medications and necessary supplements not covered by my insurance

Thank you to everyone who has supported me this far: During some of the hardest times of my life, when I've felt very alone. During this time of extreme vulnerability, I've shared snippets of my life that often go unseen. Behind the scenes is the invisible battle that's going on beneath my skin. The silent pain, the missing out on life experiences, the medications, and never knowing what to expect: will I feel "okay" today or will I be stuck in bed?I've lived a lot of my life in bed the last 2 years. But your support encourages me. Inspires me. It keeps the hope alive. I know I will heal. And when I do, nothing is going to stop me. I’m still going.

Thank you for your time in reading and sharing my story! 


Much love, 

Rachel 

See more of my story on the More Than Lyme Blog 

http://www.morethanlyme.org/stories/2016/10/5/rachel-omalley

If you want to learn more about Lyme, these are two interviews that explain the complexity and detremental effects of the disease. 

Lyme & Reason: Dr. Steven Phillips Interview

Ally Hilfiger on Lyme Disease